The 2021 CRN Summer Online Conference "The Beat Goes On" July 15-19, 2021 While this event was originally slated to take place in person in Nashville, TN, in light of…
2021 GRIN2B Family Weekend July 9-10, 2021 This event is open to patients and families affected by GRIN2b-related neurodevelopmental disorder and related diseases. The weekend will be focused on building…
HCU Network America, Organic Acidemia Association, and Propionic Acidemia Foundation's "LAND OF THE FREE, HOME OF THE BRAVE" 2021 Conference June 26-27, 2021 The Land of the Free, Home of…
RARE on the Road 2021: Rare Disease Leadership Tour In-Person Training and Networking Chicago, IL May 22, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together…
RARE on the Road 2021: Rare Disease Leadership Tour In-Person Training and Networking Miami, FL May 15, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together…
RARE on the Road 2021: Rare Disease Leadership Tour In-Person Training and Networking Las Vegas, NV May 1, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked…
Champions to CureDuchenne Join us for a magical evening under the stars. The event features gourmet food, cocktails, casino games, and live and silent auctions for a night of fun…
Join Burning Nights CRPS Support for our next online complex regional pain syndrome (CRPS) support group on Wednesday, March 17, 2021. Burning Nights CRPS Support are still continuing to provide…
RARE on the Road 2021: Rare Disease Leadership Tour A Rare Disease Leadership Interactive Webinar March 23, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together…
Rare Disease Day at NIH March 1, 2021 Rare Disease Day is held every year to help raise awareness surrounding rare diseases and the people that are impacted by them.…
The FH Global Summit Session 5: New Frontiers of FH Care February 17, 2021 This session will focus on the future of FH care. Can CRISPR gene editing technology help…
Join Burning Nights CRPS Support for our next online complex regional pain syndrome (CRPS) support group on Wednesday, February 10, 2021. Burning Nights CRPS Support are still continuing to provide…
2021 IWMF GLOBAL EDUCATIONAL WEBINAR Why Clinical Trials Matter and How to Find the Right One for You February 9th, 2021 Featuring Neena Kennedy, RN, BSN, OCN Clinical trials are…
The Rare Disease Legislative Advocates' Monthly Webinar January 28, 2021 This months' webinar from the RDLA will focus on the policy priorities of the Everylife Foundation for year 2021, as…
The FH Global Summit Session 4: Lp(a) and Drivers of Inherited Risk January 27, 2021 This session will investigate lipoprotein (a), which has been identified as an independent risk factor…
Patient Worthy is excited to announce that this Saturday a solidarity concert will be held in Noáin in favor of Dravet syndrome. United by the Dravet through Ranchera Music…
On January 21, 2021, the Rare Disease Legislative Advocates (RDLA) hosted an online webinar that focused specifically on the subject of advocating for rare disease health policy at the state…
Rare Disease Legislative Advocates' Special State Advocacy Webinar January 21, 2021 The special webinar from the RDLA will focus on rare disease advocacy at the state level. Attend this session…
NORD's COVID-19 Vaccines Update Webinar FDA and CDC Leaders Address the Rare Disease Community January 15, 2021 NORD, in collaboration with the Muscular Dystrophy Association, Cystic Fibrosis Foundation, and The…
Join Burning Nights CRPS Support for our next online complex regional pain syndrome (CRPS) support group on Wednesday, January 13, 2021. Burning Nights CRPS Support are still continuing to provide…
Pediatric Concerns in EDS and HSD: Exploring The Impact of Misdiagnosis January 10, 2021 Virtual Webinar Event Hear from members of the Ehlers-Danlo syndrome community who have been affected by…
The Rare Disease Legislative Advocates (RDLA) held a webinar on December 3rd, 2020. This event focused on the organization's goal of passing Cures 2.0, a bill that would help further…
The Reuters Pharma & Patient USA 2020 virtual conference included a number of shorter presentations that focused on specific approaches to help drug companies better meet the needs of patients.…
Managing Your Atypical HUS Connect. Learn. Take Action. Live Webinar Monday, December 14th, 2020 Alexion invites patients and families living with atypical hemolytic uremic syndrome (HUS) to an educational program…
Join Super T's Mast Cell Foundation for... Super T's Gift Card B-I-N-G-O Saturday, December 12, 2020 Join in this virtual game of bingo to help fundraiser for the organization and…
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